One of my former law school professors, Susan Wolf, was on Minnesota Public radio this morning, discussing the Schiavo case. I tried to call in with a comment, but the producer claimed I was too difficult to understand. It probably didn’t help that my voice is still a little scratchy from my cold. But hearing her voice reminded of the hours I had spent in her classes. I was in the middle of my second year and starting to feel frustrated with law school. I had been taking some really dry classes (Evidence, anyone?) and I didn’t have a clue about what area of law held any interest for me. I signed up for Professor Wolf’s Health Law course and for the first time I felt really engaged with the readings and the subject matter. I started to think that I might want to pursue some kind of career in health law or policy. It took me a while to find something in that field, but the work I’m doing now is the directly attributable to Professor Wolf’s influence. I wrote her a quick e-mail later in the day to say I enjoyed hearing her on the radio and to thank her for setting me on my current path.

One point that most media outlets have overlooked in their breathless coverage of the Schiavo case is this: when Bush was still governor of Texas, he signed into law a piece of legislation called the Futile Care Act. It allows hospitals to withdraw life support from patients who are deemed terminally ill and are unable to pay for continued treatment. Life support can be removed over the objections of family, as recently happened in the case of a six-month-old-boy whose life support was removed over the objections of his mother.
You know what, I’m tired. I’m tired of the hypocrisy of the religious conservatives who rail on about their commitment to a “culture of life”, but then give a collective shrug when asked about the impending fiscal crises facing two programs that serve millions of people with significant disabilities, Medicare and Medicaid. I’m tired of the disability activists that proclaim their commitment to independent living and self-determination, but then don’t hesitate to use words like “vulnerable” and “helpless” to describe their brethren when it suits their political agendas. I’m tired of the cable news networks and their shamelessly superficial coverage of the story and their obvious intellectual and journalistic laziness that prevents them from covering the story with any greater degree of thoughtfulness or depth.
Bread and circuses, baby. Or, to put a modern spin on it, Big Macs and Fox News.

My sister just informed me that she ran into Prince this morning at a bagel shop. You would think that someone like Prince has people whose job it is to get the man his bagels. Maybe he likes mingling with the plebes every now and then.
She’s also been telling me about her new boyfriend. As her older sibling, I have high expectations for any of her potential suitors. I haven’t met this new beau yet, but when I do, he’ll have a lengthy questionnaire to complete. I actually have a running bet with myself regarding which of my siblings will be the first to get married. Right now, I’d put the odds in favor of my sister, but my brother always has the potential to pull ahead. And no, I don’t have any odds on myself. I suppose you could call me something of a dark horse in this race. Right now, I’d be thrilled if I could get a dinner date with someone. I’ve considered the whole speed-dating thing, but that seems to depend on one’s ability to be a fast talker, which I’m not. It might be worth trying, though, just to see what kind of reactions I get.

Harriet McBryde Johnson had a a recent article in Slate discussing the Schiavo case. She makes ten points that she thinks are being obscured in the current emotional maelstrom surrounding the issue. I don’t want to respond to every single point, but I want to respond to some of her statements that caught my attention:
Ms. Schiavo is not dependent on life support. Her lungs, kidneys, heart and digestive systems work fine. Just as she uses a wheelchair for mobility, she uses a tube for eating and drinking. Feeding Ms. Schiavo is not difficult, painful or in any way heroic. That Ms. Schiavo eats through a tube should have nothing to do with whether she should live or die.
I’m not sure I get the distinction. I’ll use myself as an example, simply because it’s convenient. I use both a feeding tube and a ventilator. If either device were removed, I’d probably die. The feeding tube may not have as many flashing lights or buttons but that doesn’t make it any less critical to my survival. I agree that the fact she has a feeding tube isn’t determinative in Schiavo’s case, but it is an intervention on the same level as a dialysis machine or a ventilator.
There is a genuine dispute as to what Ms. Schiavo believed and expressed about life with severe disability before she herself became incapacitated; certainly, she never stated her preferences in an advance directive such as a living will. If we assume that she is aware and conscious, it is possible that, like most people who have lived with a severe disability for as long as she has, she has abandoned her preconceived fears of the life she is now living. We have no idea whether she wishes to be bound by things she might have said when she was living a very different life.
Most of the court-appointed physicians seem to agree that Schiavo is in a vegetative state. Putting that aside, I think it’s presumptuous for us to project our own views on living with a disability onto a woman we don’t personally know. Many people with acquired disabilities never completely accept their altered existence. It is true that Schiavo didn’t leave an advance directive; that’s why we look to the judgment of those who know the individual best; in this case, the husband.
In addition to the rights all people enjoy, Ms. Schiavo has a statutory right under the Americans With Disabilities Act not to be treated differently because of her disability. Obviously, Florida law would not allow a husband to kill a non-disabled wife by denying her nourishment. It is Ms. Schiavo’s disability that makes her killing different in the eyes of the Florida courts. Because the state is overtly drawing lines based on disability, it has the burden under the ADA of justifying those lines.
I’m curious to understand exactly how the ADA applies in this situation. It’s not the state that is withholding treatment from Schiavo, which pretty much rules out a Title II claim. Title I (dealing with employment) and Title III (addressing places of public accommodations) don’t apply. It is not solely her disability that distinguishes Schiavo’s case; it is the role of her husband as health care proxy to which so many people are objecting. In every state, marriage is defined as a bundle of rights and obligations. The ability to make health care decisions, barring an explicit directive to the contrary, is part of that bundle of rights. To turn the tables, do we take away that right from a spouse once the other spouse becomes disabled? Isn’t that a more obvious deprivation of rights–for both spouses?
The whole society has a stake in making sure state courts are not tainted by prejudices, myths, and unfounded fears�like the unthinking horror in mainstream society that transforms feeding tubes into fetish objects, emblematic of broader, deeper fears of disability that sometimes slide from fear to disgust and from disgust to hatred. While we should not assume that disability prejudice tainted the Florida courts, we cannot reasonably assume that it did not.
This one has me scratching my head. What makes federal courts any likelier to be enlightened on disability issues? The judges on federal courts are not endowed with Solomonic wisdom when they assume the bench. They are humans and they have their own prejudices and biases, for good or ill. To second-guess the decisions of state courts is tantamount to creating a grown-up table and kiddie table of jurisprudence.
I have a lot of respect for Ms. McBryde Johnson’s writing and advocacy work, but some of her statements on this issue need clarification. Maybe someone will send this blog entry to her and we can have a good ol’-fashioned debate. Like I’ve said before, the disability community is not of one mind on this, despite media portrayals to the contrary.

The TV-B-Gone keychain has been around for a few months now. The intent of this little device is to surreptitiously turn off televisions in public places like bars and restaurants. I’m all for it. If I want to watch TV, I’ll stay home. But I’m urging the designers to also invent a similar device for shutting off the damn sound systems that blare out music in those same public places. I’m tired of meeting a friend at a bar and having my voice compete with the Greatest Hits of the 80s collection coming out of speakers turned up to 11. If it’s a contest of decibels between me and the Power Station’s “Some Like It Hot,” Power Station will always win. I’ve heard rumors of pubs and restaurants where the only sound you hear upon walking through the door is the quiet buzz of human conversation. However, I suspect those places only exist as urban legends.